January Update

The Hadley family, the Hadley Hope Fund Board of Directors, and all the NPC families, would like to thank everyone for  supporting research to find a cure for Niemann-Pick Type C Disease.  2012 was another overwhelming year of support, both financially and personally, and we are in sincere gratitude to for your continued thoughts and prayers.

As our last newsletter stated, we have had a lot of good news and promising results, with Peyton and Kayla’s continued treatment with Cyclodextrin.  And, we are very excited about the upcoming clinical trial that will lead to more NPC patients getting treatment.  It is amazing to reflect back at the advances that have been made in treatments in NPC, but we realize there is still much more to be done until we can claim victory over this devastating disease.  That is why we will continue to persevere in our mission to find a cure for ALL NPC patients, and to always continue the fight.  We sincerely thank you for joining us in this quest!  Let’s make 2013 an even better year for Hope!

Other News:
If anyone is interested in a volunteer position, and can spare a couple hours per week, the Hadley Hope Fund is looking for someone for administration involving donation spreadsheets, financial records, deposits, tax donation letters, and Facebook cause updates.  This person will need some experience with spreadsheets/Word documents and would be working with our board Treasurer.

Also, if anyone knows of a  registered nurse in the Medford area certified/trained in accessing ports, and could assist with our home infusions, please let us know!

Blessings to everyone in the New Year!

Bryan & Laura